The role of race/ethnicity in donor decisions about unrelated hematopoietic progenitor cell donation; Exploring reasons for higher attrition among racial/ethnic minorities

Abstract There are >30 million potential unrelated hematopoietic progenitor cell (HPC) donors listed on international registries but 30-50% are unavailable after matching a patient. In the US, racial/ethnic minorities opt-out of donation at higher rates, and a previous study identified factors associated both with attrition and ethnic group membership. Attrition among minorities is also higher in the Anthony Nolan UK registry (35% in white British [WB]; 56% in non-white British [NWB]), but it is not clear what factors produce higher attrition in the UK and whether they are similar to those found in the US. 357 UK potential donors who matched a patient completed a questionnaire. Key factors were compared by donation decision (continue or opt-out) and by race/ethnicity (WB vs NWB). The pattern of UK results was compared to that of the previous US study for variables assessed in both studies. Across WB and NWB donors, higher attrition was associated with poorer physical/mental health, greater ambivalence and more concerns about donation. Donors who opted-out also reported less interaction with the registry and 16% indicated that more interaction with the registry would have changed their decision. Those opting out of the registry and minorities were both more likely to report religious objections to donation and to mistrust the fairness of HPC allocation. The pattern of findings was similar in UK and US samples. Registries should maintain contact with potential donors after recruitment, aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs and HPC allocation.